Number 2 – uh oh! (Part 1)

Today I am reflecting on the preponderance of the number two in my life. My wife and I together are two; my daughter is two years and two months old; we have two household pets (a dog and a cat); after the tragic death of Peking the Pecking Pekin two weeks ago, we now only have two chickens; and two weeks from today, we are due to welcome baby daughter number two into the world.

And then we’ll be in more number two than we know how to handle! (Come on, admit it, you were expecting a poop joke).

Yes, my wife is thirty-eight weeks pregnant. I might have forgotten to mention this over the past, oh, thirty-eight weeks. Partly because I wrote a series of posts about how I wasn’t keen on having another baby, and I hate going back on myself; and partly because of good, old-fashioned denial.

Not that the pregnancy wasn’t planned – it was, and I’ll explain about the decision process in Part 2 – but I’ve been caught in a quagmire of complacency and the mistaken belief that I had more time. It was always, ‘I’ll do it tomorrow,’ or, ‘I’ll do it next week,’ but I’ve run out of next weeks and I might have run out of tomorrows too, so I’d better do it now.

You see, the first time you’re expecting, you go to all these classes, buy all these weird and wonderful products, read everything you can about babies and child-rearing, rearrange the entire house, get everything ready, and pontificate about what it means to be a parent. Consequently, the baby takes forever to arrive and you’re in touch with the process every step of the way.

Not so with second pregnancies. The second time round, having been through it all before, you’re a lot more relaxed about the whole thing. I mean, you’ve already got everything a baby could ever need, the house is as babyproof as a marshmallow, and having successfully raised a child from babyhood to toddlerhood, you’re pretty confident you know how this parenthood thing works. Instead of living, breathing, eating, drinking and sleeping pregnancy, therefore, you’re not as closely tied to the day-to-day development of your child, so it races by with little notice until you realise with shock that it could literally arrive any moment and you’ve not prepared yourself emotionally for that wonderful, terrifying, exhilarating, traumatic and altogether life-changing day.

But that’s only half the story of why second pregnancies race to an unexpectedly sudden climax. The other half is that there’s already a pint-sized version of yourself tearing around the house, and throwing herself down the stairs, and loving you, and hating you, and hitting you, and hugging you, and generally taking all your attention, all your love, and all your energy, so you can’t spend anywhere near as much time thinking about the second unborn baby as you did the first. That’s not really fair on the second bump, I know, but it’s the way it is, although I’m fairly certain that my neglect of my child in utero won’t have that many long-term consequences. What’s important is that I focus on her once she’s born.

And therein lies the other reason I’ve avoided thinking about my impending second child until the last moment – I’m terrified of how it’ll change things, I’m terrified of how it’ll affect my relationship with my first daughter, and I’m terrified of letting them both down.

With your first child, you don’t have to divide your attention. You lavish everything upon her because you can. Every need she has, you meet there and then. You give yourself to her, body and soul. She is the centre of your universe.

How can I give that to my second child? Clearly, I can’t. And how will my first child cope when I can’t give it to her anymore either? The best thing I’ve got going for me is the closeness of my relationship with my daughter, and I don’t ever want to lose that, but equally, I want to have the same with my second daughter, and I’m struggling to see how that’s possible. I’ve always considered my heart as fixed in size – one child can have all my heart, two children can have half each, three a third, four (god forbid!) a quarter, and so on. The only way out of this diminishing is for my heart to double in size each time – and I’m not sure there’s enough room in my chest for that. Or perhaps, in my typically autistic way, I’m far too focused on this ‘heart’ metaphor and should stop trying to intellectually analyse something that is beyond conscious comprehension.

I said in my earlier posts on the subject that having a first child is a matter of faith – trusting that you’ll be able to cope and it’ll all work out okay – but that a second child is more of a conscious decision. I’m only now realising that having children is always a matter of faith.

Because for all my cocksure complacency, my know-it-all arrogance and bluster, I’m just as scared this second time around as I was the first.

 

Happy Father’s Day

Happy Father’s Day to all dads, whether old or young, with big children or small, neurotypical or otherwise. Remember, anyone can be a father, but it takes work, dedication and understanding to be a dad.

I spent my first Father’s Day in NICU, the Neonatal Intensive Care Unit, my little girl in a plastic crate with a tube in her nose. I came in first thing in the morning, bleary-eyed and overwhelmed, to find a mug beside her bed that said, ‘World’s Best Daddy’, and a card from my daughter that contained her footprint in pink paint. To the paediatric nurses and prem baby charity Bliss, I have to say that it made all the difference to me that day. Thank you for your sensitivity and your kindness. Little things make all the difference.

I have written an open letter about this experience to my daughter for Autism Wessex. Feel free to have a read.

All the best, and keep up the good work!

Gillan

Managing the Toddler Stage

When people see you struggling with a heavy load, they don’t ask if you’re doing an awesome job or exceeding all your expectations, or if carrying heavy loads comes naturally to you – they say, ‘Can you manage?’

I think there’s a lesson there for all of us.

As a dad, and an autistic dad at that, I want to be the best parent on the planet – guide, teacher, confidante, protector, therapist, playmate, master and friend. I want to be friendly, understanding, patient, relaxed, calm, tolerant, respected and in control. I’m pretty sure that’s normal – no parent thinks to themselves, ‘Damn I wish I was worse at this than I am.’ But where I possibly differ from many is my rigid, black and white, all-or-nothing approach to the subject.

You see, to my way of thinking, if I’m not the best dad in the world, then I must be the worst; if I’m not excelling, then I’m failing; if I’m not winning then I’m most definitely losing. My benchmarks, my expectations and my standards are set so high you need oxygen and ice axes to reach them. This is unrealistic, and I know that, but it doesn’t stop me striving for greatness.

Up to now, this hasn’t been much of a problem. There have been trials and hardships, sure, but every step of the way I’ve overcome them. A bit of perseverance here, some tender loving care there – all it required was patience, endurance and a sense of humour. Simple.

Not so now that she’s hitting two. This terrible toddler stage is something else entirely.

Everything that took minutes before now takes hours. Everything that once was easy is now like quantum mechanics. And everything she used to do willingly has become a clash of nuclear powers that leaves only devastation in its wake.

Bedtime, for example. I used to put her down, read her a story, and that would be that – maybe I’d have to stick her back under the covers a couple of times overnight, but nothing more than that.

Now it’s like carrying a hissing, spitting baby tiger up the stairs, trying to avoid getting your eyes scratched out while enduring a barrage of feral, bestial roars that befuddle your senses and threaten to burst your eardrums. You put her down in bed, and she kicks off the covers and is at the bedroom door before you can escape. So you fight to lie her back down, and you reason, threaten, beg, cajole and finally bribe her with a story until she’s finally quiet and allows you to leave.

Three seconds after you close it, the door flies open and she hangs over the stairgate screaming blue bloody murder at you, as though the sky is falling down and you’re the one to blame. You hide in your bedroom, wait a minute and then pick her up, against her struggles, put her in bed, against her screams, throw the covers over her and race to the door.

And then the whole thing repeats.

It’s like being trapped in Tartarus with a cruel and unusual punishment picked out exclusively for you. Two minutes, three minutes, four minutes, putting her back in bed each time only to have her wrench open the door behind you and claw maniacally at the bars. Five minutes, six, seven. The screams descend into choking splutters, snorts, grunts, growls, a demon in your midst.

Until that wonderful, horrible moment, hours later, that she’s all cried out and sits on the floor like a dejected prisoner, rattling her dummy against the bars of the stairgate locking her in her room. And you sink to the floor yourself and you slither across the carpet to the stairs, lowering yourself inch by inch, praying they don’t creak because at the slightest sound she’ll start up again.

And you slink away and fall on the sofa, and you feel like bursting into tears because you’re battered and bruised, it’s all so hard and you can’t take it anymore.

And then she starts screaming again.

Unbelievably, the days can be worse. For the past three days, my home has been a war zone. The house is a mess, the floor covered with toys, and I decided that enough is enough. I told her she couldn’t get out any more toys, or watch Peppa Pig, until she had put her wooden blocks away. Two-and-a-half hours later, having screamed, cried, shouted, attacked me, laughed, giggled, batted her eyelids, hugged me, pleaded with me, thrown herself into the walls, thrown the blocks, hit me with her doll and overturned half of the furniture, she put the blocks away.

Did I feel jubilant, triumphant, victorious? Hell no. I felt emotionally raw from the hours of abuse, fighting to stay calm as she pressed every button and tested every boundary. I am the mountain worn away by the sea. But I consoled myself that the next time, it would be easier.

Yesterday, I told her to put away her wooden blocks before we went to the park. Three hours later, on the verge of screaming and crying myself, she put her blocks away. I won. At the cost of my soul and my sanity.

Today, to be fair, it only took one hour. But who knows how long it’ll take tomorrow?

I’ve never really understood the idea of picking your battles – I’ve always been of the opinion that if a principle is at stake then you attack it wherever you find it – but I’m discovering that flexibility in parenting a toddler is a must. After hours of fighting over the wooden blocks, when she started taking the DVDs out of their cases and putting them back in the wrong ones, you know what I did?

I pretended I didn’t see.

I’ve drawn a line in the sand, nailed my colours to the mast – the wooden blocks are the issue on which I hang my hat. If I can master this one thing, then I’ll deal with everything else, but I can’t do it all at once and I don’t have the energy or the emotional resilience right now to be master of all things.

Because the truth is, while I might want to be good at every aspect of parenting, to excel and overcome and be the best damned parent in the world, I’ve realised that in order to survive raising a toddler you have to lower your standards, relax your ideals and temper your expectations, or you’ll go crazy.

And that’s okay. Like the man with the heavy load, nobody is asking if I’m excelling – they’re asking if I can manage. And yes, I can.

That’s the lesson I take from this week – I might might want to conquer Everest, but setting my sights on Kilimanjaro as a more realistic alternative doesn’t make me a failure as a parent, does it?

Does it?

 

My Life With Autism

For anybody in the Dorset/Hampshire borders region (or further afield, I’m not fussy!), I’d like to announce that I’m talking at an event on Tuesday evening, June 6, entitled ‘My Life With Autism’.

It’s hosted by Autism Wessex at Portfield School from 7:00-9:00pm and it’s free, but as spaces are limited you need to book tickets from the following link: Get Involved.

I will be talking about my journey to diagnosis, the difficulties of growing up undiagnosed, work, parenting, and day-to-day life. Along the way I’ll provide hints and tips on living with the condition that have proved helpful in my own life. There will also be the opportunity to ask questions.

I hope to see some of you there and thanks for reading!

Parents with Autism

I have mentioned before the overwhelming focus on children in the literature on autism, and the corresponding lack of study on adults with the condition. Indeed, researchers know next to nothing about autism and sex, and autistic parents, which seems odd given that one often leads to the other and the consequences can be profound and life-long.

Studying the issue of parents with autism would be helpful in two major respects. First, it would ensure that autistic parents received appropriate guidance and support for the demands of parenting, which, let’s face it, is difficult whether you are on the spectrum or not. Secondly, it might help to normalize the notion of autistic parents and remove much of the stigma surrounding this section of the community.

If you go online, much of what is written about autistic parents is by adult children of these same parents, and almost universally the experience seems to have been less than positive. Some say allowing autistic parents to raise neurotypical children is a form of abuse, and others that autism constitutes a ‘parenting disability’. There are even sites that claim autistic parents inevitably raise emotionally and psychologically damaged children. As an autistic parent, with an autistic wife, and raising an apparently neurotypical daughter, all I can say is: ouch.

On the other hand, I neither agree with nor believe any of these statements. For one thing, many of these parents haven’t received a diagnosis of autism by any other authority than their children, who might not necessarily be able to disentangle autism from other conditions such as narcissism, avoidant personality disorder, OCD, and just being a plain bad parent; and for another, people who have had an unhappy childhood and a strained relationship with their (autistic) parents are far more likely to write a blog about it than people who had a happy childhood and good relationship. Thus the picture is skewed away from reality because of the very lack of objective input from academic researchers mentioned above.

It’s also important to note that these apparently awful autistic parents had not received a diagnosis and therefore did not know they were autistic – and to me, knowing is everything. If you know you have autism, you know to work on certain areas in which you’re weak; you know to regulate your behaviour in order to meet the needs of your child; and you know to get help and advice from others. Autism is therefore no barrier to being an effective parent.

My belief is that your parenting ability comes down to you as an individual. There are some fantastic autistic parents out there and some terrible neurotypical parents, just as there are terrible autistic parents and fantastic neurotypical parents. The point is, a diagnosis or otherwise doesn’t dictate an individual’s ability to parent or the long-term outcomes for their child.

I was lucky enough to be interviewed by Spectrum Magazine for an article on parents with autism that discusses these very issues. It is well worth a read, and contains some beautiful photos of my wife and daughter, and unfortunately some of me as well. Here’s hoping that these holes in the story of autism will soon be filled.

Romantic and Parental Love: an Aspie’s Perspective

When people say ‘I love you,’ what do they really mean?

As an Aspie, love has always been a confusing concept to me. When I was younger I took my cue from movies and TV, believing in a fantasy, fairy tale form of love that moved mountains, crossed oceans, and transcended space and time. People in love never argued, never had to compromise, and never had to say sorry, for love is such that they could communicate without words. It was a force so powerful it could even conquer death. Thanks Hollywood!

For some reason, the divorced and unhappily married people around me didn’t contradict my belief in a happily ever after. Indeed, they were an object lesson not to settle, to keep holding out for ‘the one’ – that person who would make everything better. I was half a person, broken and drowning, and she was half a person, broken and drowning, and together we would become a single whole, entire and swimming. We’d live in and through and for each other. Limerence, I think that’s called. Looking-for-a-miracle-cure-for-my-depression would be more accurate.

As I got older, I started to notice there were a few holes in this idea of love. For one thing, there are over seven billion people on this planet, so if there’s only one person out there for you, the odds of you finding them are too small to be worth calculating – unless you also believe in magic, and destiny, and unicorns, which I don’t. For another, from a psychological perspective, the very notion of being incomplete and needing another person to fulfil you puts you in a rather vulnerable position. Not to mention that it’s an incredibly disrespectful way of viewing your partner – only half a person without you. What rot.

I then redesigned my concept of love. It was not an emotion anymore, not a feeling, but a psychological compulsion programmed into you by biology, society and the greetings card industry. You got together with someone not to complete one another, not to make you happy but to enhance your own happiness. It was about two wholes coming together and remaining two wholes. Think two islands joined by a causeway that gets covered every high tide.

The emotional aspect of a relationship – the butterflies, the happiness, and all the other intense experiences of the honeymoon period – is simply a mislabelling of nervousness, lust and the fulfilment of social expectation. And once that exciting time fades, you’re left with a need for the other person that has developed through shared activities and the difficulty of disentangling your lives and CD collections. Not a particularly romantic idea, perhaps, but certainly more realistic.

As time went on, I decided that denying an emotional aspect to love didn’t entirely fit the reality I saw around me or that I experienced myself. And when you’re in a relationship, there is an undeniable merging of two people, a coming together of hopes and dreams, sacrifice and support, until you struggle to distinguish where you end and the other person begins. Clearly, I needed to come up with a new definition.

Love is partly a feeling, partly a psychological compulsion, partly the result of biology, partly a fulfilment of a social need, and partly an idea you consciously engage with, negotiate and decide upon yourself. Think two islands linked by a bridge, a causeway, a swamp, a lagoon, and a tangle of vegetation, all of which change depending on the height of the tide and the time of the year.

How does this work in practice? It means that my wife and I are bound together by a variety of things, some deliberate, some accidental, some beyond ourselves, some of which we’re unaware of; it means we are sometimes close, sometimes more distant, that sometimes it’s easy to connect and sometimes bloody difficult; and that ultimately, though we could sever our ties or seek other people to love, we have chosen to be together. This is what it means when we say, ‘I love you.’

Or at least, that’s what it means when we’re talking about romantic love.

Parental love is something entirely different.

There is no choice when it comes to parental love. You don’t consciously create ties with your child, psychoanalyse why you love them, adapt the form it takes to suit both of you – it just is, with an intensity beyond anything else.

And it asks no reciprocity. You’re not even sure it’s a two-way thing, and it wouldn’t really matter anyway, because you’d go on loving them regardless. You’d suffer any indignity so they don’t have to, fight the world if it was necessary, and lay down your life in a heartbeat. Autistic or otherwise, I think most parents would feel the same way.

Where autistic parents can differ is in our expression of that love. The children of autistic parents often grow up feeling unloved because, as we know we love them, we assume they know too and therefore don’t feel the need or even understand we have to tell them. Which is why, since birth, I have showered my daughter with hugs and kisses and smiles, even when they don’t come naturally to me, so she grows up feeling loved.

But it struck me the other day that there is one thing I’ve not done in the twenty-two months she’s been with us: I’ve never said to her, ‘I love you.’ It just never occurred to me to say it. I don’t know if that’s normal, I don’t know if it’s odd, but from now on I’m going to tell her every day – just so that she knows.

Even though it doesn’t come naturally to me.

Children with autism become adults with autism

There is a deductive argument so straightforward and sound that all intelligent, educated, free-thinking people should be able to grasp it with ease. It’s so patently obvious that I shouldn’t even need to write it down because we all just know it to be true. I will, however, because it is necessary for what follows.

  1. Autism is incurable.
  2. Children grow up.
  3. Therefore, children with autism become adults with autism.

I mean, it couldn’t get much simpler than that. You’d have to be a philosophical contortionist to somehow argue against it.

And yet, looking at the way that autism is treated, represented, categorised, theorised and mythologised, you’d be forgiven for thinking autism is a childhood disorder that disappears on your eighteenth birthday. You step up to your birthday cake a person with autism, and as you blow out the candles, lo and behold, you’re neurotypical! Hallelujah!

It strikes me as bizarre that even though we all know that children with autism become adults with autism, the latter group is virtually invisible. From the services available, to funding, to treatment, to research, to specialists, to TV programmes, to books, to websites, to expertise, it’s all heavily skewed towards children with the condition. Much of it simply vanishes as soon as a person reaches their majority, as though nobody realised that these children with needs would one day become adults with those same needs that are now, sadly, unsupported.

Go look at 100 books on autism, you’ll find that around 99 of them have children or childlike images on the cover, and contain chapters dealing with school and adolescence and how you can help your child make friends. Research the statistics on autism and you’ll find statements like, ‘1 in 88 children has autism’, when surely they mean 1 in 88 people has autism? Then try and find academic studies on autism and sex or on parents with autism and you’ll find it pretty damned hard, because the experts don’t seem to realise that autism extends beyond the first eighteen years.

When, as an adult, I spent a decade seeing psychiatrists and psychologists under the Mental Health Team, not one of them ever brought up the possibility I might have autism. When I asked to be seen by an autism specialist, I discovered there was one person qualified to diagnose adults in the whole of Dorset – a county with a population of almost 800,000 people – and she could only devote one day a week to this. When I was finally diagnosed with autism at 28 (and immediately discharged by the Mental Health Team because ‘autism isn’t a mental illness’), I went to the Learning Disabilities Team, to be told that all of their support services were for children with autism, and they had neither the funding nor the expertise to cater to adults. So that was that.

But the greatest irony, and to me the greatest illustration of this very real problem, is the book I had published last month. Now, I am incredibly grateful that it has been published and I’m gratified to learn it is helping people, but I wrote it specifically to address a shortfall in the autism literature, namely, people diagnosed with autism as adults. The book is entitled An Adult With an Autism Diagnosis. It is written for adults with autism, about adults with autism by an adult with autism. So where does it appear on Amazon?

Here’s the directory information: Health, Family & Lifestyle > Pregnancy & Childcare > Children’s Health & Nutrition.

Ever get the feeling you don’t exist?

An Adult With an Autism Diagnosis

Well, it’s here: today my book, ‘An Adult With an Autism Diagnosis: A Guide for the Newly Diagnosed‘ is released into the world. You can buy it from Amazon by following one of these links: Amazon UKAmazon US, or from your regular book supplier.

Here is the blurb:

Being diagnosed with autism as an adult can be disorienting and isolating; however, if you can understand the condition and how it affects perceptions, relationships, and your relationship with the world in general, a happy and successful life is attainable. Through an introduction to the autism spectrum, and how the Level 1 diagnosis is characterised, the author draws on personal experiences to provide positive advice on dealing with life, health, and relationships following an adult diagnosis.

The effect of autism on social skills is described with tips for dealing with family and personal relationships, parenting, living arrangements, and employment. Important topics include disclosure, available resources, and options for different therapeutic routes. On reading this book, you will learn a lot more about the autism spectrum at Level 1, be able to separate the facts from the myths, and gain an appreciation of the strengths of autism, and how autism can affect many aspects of everyday life. Drawing from the author’s lived experience, this book is an essential guide for all newly diagnosed adults on the autism spectrum, their families and friends, and all professionals new to working with adults with ASDs.

So, why did I write this book? The short answer is that when I was diagnosed with autism at the age of 28, having only heard of Asperger’s Syndrome and high-functioning autism a year previously, I was sent away without so much as a leaflet to explain what it was, why I had it, how it would affect my life, and why it had taken so long to identify. I had nobody to talk to – nobody knowledgeable, at least – who could help me come to terms with this life-changing news.

Like anybody, I turned to books and the internet. I discovered, much to my dismay, that books on autism seemed to fall into three categories: those for autistic children; those for parents of autistic children; and those for healthcare professionals working in the field. There was very little about adults with the condition and nothing for the many thousands of people diagnosed each year as adults.

The internet was worse. There were dozens of sites, and now hundreds, if not thousands, offering conflicting, confusing, inaccurate, unreliable, opinionated and impenetrable information and advice, often littered with jargon and insider knowledge, with no explanations for the layperson. I therefore struggled to accept the diagnosis, to make sense of where I now found myself, and to understand what any of it meant for my future.

I wrote this book for people who find themselves in a similar situation, a one-stop shop for those newly diagnosed with Asperger’s and ASD Level 1. It is not exhaustive, not ‘the only book on autism you will ever need’, but it contains answers to everything I wanted to know when I was first diagnosed. It is designed to help explain the basics, untangle the jargon, and describe in clear and plain terms how autism might affect the various parts of your life.

If this book can help just one person avoid some of the confusion and grief that I went through upon being diagnosed, if it can help them learn about their condition and be able to see the diagnosis not as an end but as a new beginning, and if it can make them feel not quite so alone in the world, then the effort will have been worth it.

Happy reading!

Gillan Drew

 

I speak English, sort of

As the father of a twenty-month old daughter, the issue of learning to communicate in the English language is obviously high up on my list of current interests. We’re lingering at the monosyllabic phase, and while it’s fascinating that the word ‘bear’ can mean biscuit, water, bath, yoghurt, playroom, daddy sit in that chair, I want to watch Peppa Pig, and a number of other concepts we haven’t yet been able to figure out, all at the same time, it can make life a little more stressful than it needs to be. I mean, being able to tell us what she wants (biscuits), and being able to understand our response (no, you’ve already had three, you greedy little madam), would probably avoid a few of the meltdowns we’ve been experiencing lately – although, on second thought, maybe not, since the answer would still be no and she’d still have a tantrum because she wants biscuits! Regardless, learning to express our thoughts, feelings and desires through language is an important step on the road to becoming a fully-fledged member of society i.e. the moment at which you can leave home and give mum and dad a break.

Unfortunately, learning to communicate in English is easier said than done, pun entirely intended. Normally, way before the formal teaching of language in schools, kids learn to speak by being immersed in the language of their parents, and develop their communication skills through both imitation and experimentation. With two parents on the autism spectrum, however, there may be some problems with this process.

‘But you can clearly speak English!’ I hear you yell. What you really mean is that I can clearly write English, because in actual fact, a written language and a spoken language are two completely different things. I am only now realising just how true this is.

It is a well-known fact, and one I have written about before, that people with autism often take things literally, and therefore struggle with the nuances of language. While this is true, the reality of communicating in English when you have autism is far more complex than simply struggling to interpret homonyms, homophones and idioms. I mean, there are plenty of books out there that explain all of these things, and oftentimes you can work out the meaning by context. By focusing on this ‘literal interpretation of language’ spiel, it overlooks the other really weird and confusing ways that we communicate in spoken English. I’m talking about the vagaries of language that only English teachers and pedants tend to know about.

Like the way we add negative tags to positive questions, and vice versa. This morning, I said to my daughter, ‘You will be good for Granny, won’t you?’ Will you, won’t you – way to confuse the poor kid! Or when I say, ‘You haven’t done a poo, have you?’ you can almost hear the cogs whirring away as she thinks, ‘I haven’t have? Does yes mean no or yes mean yes? I don’t know, so instead I’ll just say “pooooooooo,” and leave daddy guessing.’

These constructions – a declarative statement followed by a question – are called tag questions (or question tags, depending on which side of the Atlantic you’re reading this), and these parts of spoken English can cause problems for people with autism. The modal ones – that is, those those that request confirmation of information of which you’re not certain, like, ‘You’ve just pissed in the bath water, haven’t you?’ – aren’t overly important since they simply concern knowledge. It’s the other type, the affective tag questions, that can screw up your relationships.

These are the ones that soften statements or include people in conversations – the ‘I care about you and invite you to share in my life’ questions. My wife, bless her, is a lovely lass, but she sucks at affective tags. She thinks ‘Get me a drink,’ and ‘Get me a drink, could you?’ mean the same thing, no matter how much I try to explain to her that the first is an order and treats me as a slave, without respect or consideration, while the addition of the softening tag ‘could you?’ in the second turns it into a request, that acknowledges I am a person with feelings and a need to be treated with dignity. If you can detect hurt feelings in the previous sentence, well done – even though I know she doesn’t mean it, I do sometimes wish she could speak to me with a soupcon of grace.

She’s equally bad at using the other kind of affective tag, the so-called facilitative tag, in that she doesn’t use it at all. This is the tag question that’s all about sharing and reassurance. I’ll show her a video of 2Cellos playing Thunderstruck and say, ‘This is so freaking awesome, isn’t it?’ In this manner, I am sharing my excitement and tastes with her, and inviting her to join in by agreeing with me that yes, it’s the greatest ever video on YouTube, or bringing her own opinion to bear, such as, ‘No, it’s shit’ (although nobody who has seen 2Cellos doing Thunderstruck has ever or will ever say that). If there’s something my wife is thinking about – the weather, for instance – she’ll say something like, ‘It’s so much warmer than yesterday.’ Full stop. And I look at her and think, where’s my ‘isn’t it?’ Where’s my ‘don’t you think?’ How is our daughter meant to incorporate question tags into her speech if her mother, thanks to her autism, doesn’t use them?

In all fairness to my wife, though, I tend towards the opposite extreme and use enough for the both of us. Given my problems with Theory of Mind (understanding how other people think and feel), I’m paranoid that the people I’m talking to don’t understand what I’m saying, or that I’m not understanding them correctly, or that they’re bored, or that they don’t like me, or that I’m doing something wrong, or that my thinking is flawed, so that, constantly seeking reassurance and feedback, I litter my speech with modal and affective tags – you know? Right? Yeah? Innit.

A constant problem of conversing with my wife is that she fails to respond to these cues, making me even more paranoid, and that is another aspect of spoken English usage that totally differs from the written – instant feedback. You know what I mean? You see? Do you?

Silence. As an autistic individual, she again doesn’t get that during conversations, she’s meant to go, ‘Uh-huh,’ or ‘Oh,’ or ‘Yes,’ or ‘Hmm,’ or make any one of a hundred different random noises to indicate she is listening, understanding, and involved. The silence freaks me out. Has she slipped into a coma? Have I lost her completely? Am I making any gosh-darned sense?

But then, perhaps she’s right and I’m wrong. Whenever we have an argument, I’ll throw a line at her, something like, ‘How many times have I told you not to leave your wet towel on the floor?’ and she’ll reply, ‘Sorry,’ because she knows that’s how rhetorical questions work. I don’t. So I’ll reply,  ‘I’m not asking you to say sorry, I’m asking how many times I’ve told you not to leave your towel on the floor?’ And she’ll say, ‘Sorry,’ again, because that’s still how rhetorical questions work, and I’ll reply with, ‘Sorry is not a number! I’m looking for the response, “Somewhere between dozens and hundreds,”‘ because I can be quite a dick and if someone won’t argue with me the way I want to be argued with, I’m not above telling them exactly what to say.

Then there are these wonderful things called hedges, which we slip into sentences where we’re being negative in order to reduce the impact on the other person’s feelings, because most of us don’t actually want to be mean. In spoken language, hedges often take the form of making our statements a little vague – expressions like ‘sort of’, and ‘kind of’, and ‘a bit’. I don’t think either of us use them properly.

You’re meant to say things like, ‘You’re looking sort of unwell, today,’ or, ‘Your work is a tad below what I was expecting.’ The way I use hedges is that when my wife asks me how she looks in a particular outfit, I’ll be honest and reply, ‘You look kind of like a pregnant whale with a thyroid problem.’ And then she’ll say, ‘You’re a bit of an arsehole.’ And I’ll say, ‘You’re a bit of an arsehole, aren’t you?’ confirming that, yes, I am an arsehole.

And lastly, for the people still reading, in spoken English people fill their sentences with crutch words, something I tend to incorporate into my speech and my wife does not. These are, basically, those utterly pointless words that, honestly, aren’t even, actually, effective as intensifiers, but that we use anyway to, like, buy ourselves time to think and, well, can turn into vocal tics if we’re not careful, really. You get the picture.

Given that our biggest problem at the moment is teaching my daughter to say down (‘Nom.’ Down. ‘Nom.’ D-d-d-down. ‘D-d-d-nom.’), these problems may be a way away. But, monosyllabic as she is, we’re already encountering problems with the weirdness of spoken English.

‘Have you finished your dinner?’

‘Yes.’

‘So you don’t want any pudding, do you?’

‘Yes.’

Dammit. ‘Yes, you don’t want pudding?’

‘No.’

My English teacher never taught me how to resolve this impasse!

The Long Winter

Every year I look forward to the winter, when the trees turn into skeletons reaching bony branches into a crisp azure sky, the air fills with the reassuring scents of wood smoke and cinnamon, and as the evenings draw in I can snuggle safe in the warmth of my family’s comforting embrace. And as a bonus, I get to break out my rather fine collection of furry hats and oversized jumpers, my gloves and my scarves, and best of all my cowboy boots. Winter, I think, is my favourite time.

And then winter comes and it’s an eternal wasteland of grey days, miserable nights and an ever present sense of despair. The garden turns to mud, the dead leaves swirl about huddled bushes and overturned lawn furniture, and the cold seeps inside and seems to chill your very soul until your outlook becomes as bleak as the view from your dirt-encrusted windows. Good God, I think, I bloody hate the wintertime.

Normally, I start to feel better as soon as the daffodils begin to burst up from the frigid earth, bringing with them the promise of spring and cheerier times to come; this year, the daffodils are in full bloom and this despondency shows no sign of lifting. I’m caught in my own personal Groundhog Day, and there are six more weeks of winter.

The depression goes hand-in-hand with the tiredness. There comes a time when you have to accept that tiredness is no longer a transitory state –  it is now a part of you, a defining characteristic, just another one of your personality traits. Describe Gillan: male, six feet tall, autistic, tired, mostly friendly – provided he’s had his coffee.

I wake up tired, live tired, go to bed tired. In my dreams, I am too tired to do anything – I simply sit and stare at featureless walls in an empty room. I don’t remember the last time I felt well-rested and ready to face the day ahead. This is, of course, a familiar side-effect of being a parent. You count down the hours till the little one goes to bed, because you think you’ll be able to rest, catch up, get at least some of the way towards feeling okay again. But you don’t, because tiredness is who you are now.

Combined with the depression it becomes somewhat debilitating.

I spend hours lying on the sofa just staring at the ceiling. I think I should watch a movie, but after ten minutes I switch it off because I can’t concentrate or care. I think I should walk the dog but I can’t drag myself to my feet. I think I should write but can’t stomach the empty page. I can’t be bothered to cook, so I binge on chocolate and coffee. The other morning I ate four Creme Eggs, one after the other. Yesterday I ate three Crunchie Bars back to back, like chain smoking chocolate. And then I drank five coffees in a row just so I could get through until lunch. I’m not sure which is the most unhealthy.

I know too much, about all the wrong things. I can name dozens of serial killers, only a handful of victims; can name every state in America, but not the boroughs of my local town; know all manner of mental disorders, psychological conditions and mood stabilising medications, but can’t identify the plants that grow in my own back garden. If you need me to name a thousand movies I’ve seen, a thousand books I’ve read, a thousand bands I’ve heard, I can sit down with a pen and paper and list them for you (in fact, I do this a couple of times a year just for fun); but ask me to name a hundred people I have known in my life, I don’t think I’d be able to do it.

And that is the problem with depression – your mood dictates your thoughts, not the other way around. I have a lovely daughter, a lovely wife, a lovely family; I have a book coming out in three weeks, the culmination of a lifelong dream; and I have nothing to be unhappy about. I know this; I appreciate this; yet this awareness does nothing to lift my mood. Instead, the depression makes your brain turn on itself, devour the light and turn everything to the darkness. For darkness is not simply the absence of light – it is a physical entity that spreads and consumes all before it, a shadow fire that chills as much as it burns.

You start to wonder when last you felt happy, excited, or even at peace. You try to remember if there was ever a time you experienced what other humans call ‘joy’. You track back and back, and back even further. You remember a time when you were ten and you were surfing and…no, you weren’t happy even then. So you take it to the extreme – was I happy when I was six? Four? Am I just incapable of happiness?

And then people with no understanding say things to you, like, ‘Think happy thoughts,’ or, ‘Just pick yourself up and snap out of it,’ or, my favourite, ‘What you should do is get up early and go for a nice run, then you’ll feel better.’ If I can’t motivate myself to do those things that once gave me a modicum of pleasure, how on earth am I meant to drag myself out into the cold and the wet to exercise? Whoever recommends that course of action has no idea what it is like to battle every day of your life against simply giving up. And I am tired of fighting.

For depression is not something I have done to myself. I have not thought depressing thoughts. I have not chosen to feel this way. I have not caused it through my own weakness. Depression is something that has happened to me. It is an illness I contracted when I hit puberty, something from which I have never been free. It lies dormant for a time, only to return with a vengeance. Normally in the wintertime, to be fair. A black dog creeping in from the borderlands, uninvited. And no matter how I try to kill it with thought, medication, meditation, diet, I have no doubt it will dog my footsteps the rest of my life to come.

Luckily, for the pile of apathy writing this blog, I am a parent and a husband, and those things are more important to me than my own wellbeing. I cannot indulge my more destructive, neglectful tendencies without irrevocably destroying my self-image, and I am far too egotistical about my prowess as a father and a partner to neglect my duties towards others.

If I lived alone, as I have in the past, I would wake up in my clothes, stay in bed till lunchtime, eat junk, and go back to bed without changing, washing, shaving, opening the post, or doing any of the everyday chores that make a person a functioning member of society. Instead, as a father, I must haul my weary bones out of bed each morning to get my daughter up, dressed and fed. I have to change my clothes to set a good impression, brush my teeth when she brushes hers, eat at the table with her. In the evening I have to cook my wife a delicious and nutritious dinner and I bath when she baths. I might only be going through the motions, an imitation of a living, feeling being, but in so doing I find a way to function, despite the depression. I remain a good father and a good husband even as I cave in upon myself and sink beneath the weight of my own lethargy.

This is my life now, and I can keep it going as long as I must. I have done it before and I have no doubt I will do it again many times over. I just wish this winter would end.